Personal reflections about autistic people trying to make the world a more inclusive place

Tuesday, 27 August 2013

Hands up to help - An open letter

Hi I'm
Tori, and I'm an eloquent and capable young adult. I'm here to make a
statement. I'm here to be open about belonging to the Autistic
community. Not belonging as a disconnected puzzle piece, or through a
box ticked on a census form but by being intertwined within a bright,
dynamic and compassionate community who care about each other and the
world around them.

I'm
not speaking out to talk about me. I’m not speaking out from a
personal agenda or because I somehow think this will make my life
easier. I’m here to declare this isn’t about you helping me. This
is my putting my hand up, along with many others. This isn't about my
story. This is about hope. It's about how we can help one another.

To all
the dedicated and inspiring parents, researchers and service
providers – we are not here to replace you. We’re not here to
tell you that everything you’ve done is wrong. We’re here to
thank you. We’re here to work together. We’re here to help you,
both to listen and to speak. In partnership and in unity we will be
stronger. We might not use the same words to describe it but we all
desire a future where Autistic people are able to lead fulfilling
lives, be accepted and embraced by their communities and not be held
back by their challenges.

We
don’t deny your willingness to help. We don’t want to dissuade
you from your passion. But we do want to be able to contribute. We
want to contribute in meaningful ways, not just in token gestures and
through feel good news stories. We have an opinion. It isn’t the
only opinion, but it is one that should be welcomed into the
discussion.

I have
come to the table as a reluctant advocate. Such negativity and
misunderstanding has surrounded the word autism, that many are
disconnected from the advantages of being Autistic and finding
Autistic community. I wish I had found the hope within this community
sooner, the spark I see in the Autistic people I have had the
privilege of speaking with is something to be treasured and not hidden.
I hope for a world where fear of rejection and exclusion is not a
factor in whether or not to disclose. Where I don’t feel as if
people will suddenly see me as less or become more aware and
judgmental of my limitations because of something they view as a
deficit in my potential. No not everyone is like that, but there is
enough misunderstanding out there for the concern to be real.

If the
goal is to learn to behave so we don’t appear Autistic, people can
feel excluded from the ability to be true to themselves without
judgement. That is not to say that we cannot improve, or shouldn’t
desire to change in order to become better people, but to say that we
are not that different in this respect. We can all benefit from
gaining more perspective and becoming more understanding of other
people. Our desire is to see people fulfilling their potential,
learning how to shine the light inside themselves without fear of
being chastised or rejected for seeing things in a slightly different
way. Accept me first without restriction or condition. We can equally
change how the other sees the world.

So
much division is caused by tiny little words such as ‘cure’ or
‘label’. Words have emotional power. Words can take away
someone’s dignity if they feel they invalidate their existence.
Simple words can cause such offence that they distance people from
finding their common ground, the things they do agree on. Maybe we
should focus on fulfilment and on releasing people’s potential
instead of finding a ‘cure’. These goals are not that different,
and in some cases not different at all, it’s a matter of
terminology.

One of
the things we want to vocally support is to shift to a more positive
way of viewing Autistic people and their challenges. Our challenges
may be significant, but we don’t have the market cornered on having
challenges, on untapped ability, fear of rejection, anxiety or need
for encouragement and support to become successfully who we are.
Let’s focus our perspective on moving forward and not just on
catching up. Where we start isn’t necessarily relevant, or helpful,
to the discouraged and weary.

How do
we promote a more positive way forward and foster togetherness?

By
starting to focus on the importance and value of being and not just
doing.

By
accepting everyone as valid and equally part of the Autistic
community, whatever our level of perceived ability and independence.

By
fostering potential and celebrating success whether people are
learning to use a knife and fork or are graduating from university
and stepping into the world as a professional (if you care to look
there are a what you may see as a surprising number of Autistics in
this category with qualifications in education, the creative arts,
social sciences, IT or many others).

By
remembering that we are not alone in our challenges.

By
emphasizing teaching living and not just getting by.

By
building self-acceptance alongside self-improvement.

By
seeking to understand as well as to be understood.

By
promoting respect and tolerance above compliance.

By
listening beyond the first word we might not like or agree with and
pursuing what we have in common.

By
being encouraging and welcoming people.

By
acknowledging the efforts and intentions of others even if we don’t
get it right.

It is
my sincere hope moving forward that we will work together. Let us
help. Let us contribute. We are here to give and not just to get. We
are able to listen and have things to share. We are all working
towards a brighter future and will reach it sooner and more
meaningfully if we do so in partnership.